Dance with me

You can hardly walk though town these days without tripping over some autism charity or another. In terms of awareness, the message seems to be getting out. On radio, TV and in the papers you hear about autism most days.

So why, you might be forgiven for asking, are these autistic advocates and activists not satisfied? Why are they still complaining?

It’s very simple. Awareness means nothing. What autistic people need is acceptance. Equal rights, equal opportunities. An end to exploitation and second-class status.

What does nearly every autism charity have in common? It was set up and is run by parents of autistic children. However well-meaning they might be they are not autistic. Their aims are not autistic people’s aims. These organisations are run for the parents’ benefit, not for the benefit of the autistic children and adults.

So you get Autism Speaks with their infamous blue puzzle piece: autistic children are missing something. What do we have to do to complete them, put them together, fix them?

So you get all kinds of discussions, presentations, conferences where autism is portrayed as something wrong with the child that must be mended. Heaven forbid the child might not behave like most other children! Quick! Train them how to pass as “normal”. After all, that’s what matters: that they not be an embarrassment or an inconvenience to their parents.

This constant message that autism is a disease, that the child is damaged or broken, leads parents to believe that it is something that can be fixed. That there could be a cure. That they can still hope for a perfect, autism-free child. Because they are led to see autism as something so negative, so awful, that far too many of them will subject their children to terrible suffering with unproven, unregulated and sometimes potentially deadly fake cures.

Do the charities speak out against these quacks? Rarely. The NAS (National Autistic Society) issued a statement after much pressure from activists but stopped short of actually campaigning. Others have done less or nothing.

The high-profile UK charity Anna Kennedy Online has an event, AKO Autism Expo, at Brunel University on the 11th of this month. A week tomorrow. After Anna Kennedy OBE herself was personally contacted by activist Fiona O’Leary with concerns over the legitimacy of one of the companies involved with this Expo, Fiona had hoped for decisive action to protect autistic children and their parents against misleading product claims.

No such luck. The company was dropped as a sponsor but they still have a speaker and are still exhibiting at the Expo. Anna Kennedy Online issued a legal disclaimer whereby they explicitly do not endorse any products or any exhibitors at the Expo. The trouble is that having them at your Expo still looks like an endorsement. I believe the moral and ethical decision would have been to remove any exhibitors and speakers where there are serious questions over the legitimacy of their claims.

The company in question, Brain Abilitiez, uses the BrainRx “brain training”, also known as LearningRx, that was developed by Dr. Ken Gibson, a doctor of optometry. Claims that this training was “clinically proven to permanently improve serious health conditions like ADHD, autism” were investigated by the Consumer Protection arm of the US FTC and were found to be unsupported by evidence in a $200,000 settlement last summer.

I don’t know about you but for me that raises major doubts about the claims made for the intensive, expensive “training” offered by this company. What we see here is that the charity has washed its hands of any suggestion that they have a responsibility to ensure the exhibitors at their Expo are all they claim to be.

So I have to ask, whose charities are they? Who are they run for? Are they being run for the benefit of autistic children and adults? Are they being run for the benefit of parents? Or do they exist primarily as a vanity trip for their founders?

If they truly want to improve the lives of autistic children and adults, then they need to listen to those very people. Not their parents. Not even “professionals” with their neat little labels and theories. But actually autistic people. The real experts. Only then will we see our rights respected. Only then will we see action directly for the benefit of autistic children and adults.

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29 thoughts on “Whose Charities Are They Anyway?”

I guess I saw the Autism Speaks blue puzzle piece a bit differently, Alex. I do jigsaw puzzles a lot and blue pieces are usually the sky (unlimited) or water (fluid but the most powerful force on earth). There have been many, many times when those pieces have fit into the overall picture where I least expect them, but they are critical to the finished product.

I think the parents of many autistic children worry about their child’s future, particularly after they are no longer around to care for them. We don’t want to see them being shuffled from homeless shelter to homeless shelter, we want them to be able to provide for themselves and to be safe and secure. You’ve managed that, but there are scores of others who haven’t been so lucky.

Like you, I’ve questioned how much awareness is needed for any given cause. I’m aware that people are deaf, blind, handicapped, autistic, short, tall, and a whole other host of descriptives. That’s just who they are. My job is to equip our son to get through life as successfully as possible and if that requires that he act more “normal” (i.e. hold a job, or whatever) then so be it. It’s about his ability to cope with the world. Dr. Temple Grandon once talked about how she hated using deodorant but her mentor required her to do so. She loves wearing a particular style of cowboy shirts which is her choice, but deodorant is a must. That’s the point of being “normal”. It’s not all about one individual, but one individual’s interactions with the rest of the world. I won’t go so far as to say “resistance is futile”, but life becomes less difficult when the basic requirements are met.

Thank you for taking the time to respond in such detail. If I can start with the puzzle piece, it is a symbol that has come to be seen negatively by many in the autistic community. Judy Endow puts it well in this article.

As for my own situation, I’m happy to be seen as successful, but the truth is that I am here in my 40’s and have never managed to live independently. Yes, I have been in work almost continuously for 20 years, but what few people except those close to me know is the toll maintaining that takes on me. I rely on my wife for so many things, and without her I would not manage because I would be judged as not needing assistance by the state (largely due to being in full-time employment).

I go on a lot about acceptance as opposed to awareness. Awareness is “I’ve heard of that” but it doesn’t mean people understand it. People carry a lot of misconceptions about autism and all the blue lights in the world won’t change that. I am like many in my generation who grew up before Asperger’s Syndrome was a recognised diagnosis. We existed under the radar, having to do whatever we could to try to fit in. The alternative was to stand out, and generally become a target for bullies. That happened anyway because we’re not perfect mimics. So we understand what it’s like to be pressured into conforming to “normal” expectations of behaviour, appearance and the rest. And we understand the mental toll it takes. For autistic people this is not natural behaviour, it goes against the grain. It is, more or less, uncomfortable to maintain the act day in day out. It causes stress that we can find hard to handle.

You say that “life becomes less difficult” when we conform. I’d say that it is less difficult for everybody else because they don’t have to make an effort to accommodate the different sensory needs, communication styles and behaviours that are common in autistic people. But it is certainly not easier for the autistic person. We are coming to expect that the access needs of people with physical disabilities will be addressed with wheelchair ramps, automatic doors and such like. Autism acceptance carries the promise that our access needs will be similarly met.

Thanks for your response. Interesting thoughts. Definitely will have to consider them.

Just by happenstance, we had a really fascinating series of events that happened here. Bear with me, it’s a bit long, but there is a point to it.

I frequently have to drive 15 miles on a major highway to get to my job assignment. At peak times, it requires I leave an hour before the meeting. For so long, I’d be stuck in traffic, fretting and working on what I would say when I arrived late at work. I’d really work myself up into major stress. One day I breathlessly arrived at the meeting site with the apology on my lips to discover I was actually on time, and everyone else was late. I’d stressed myself out for no reason. Now, my car clock is set five minutes fast. That gives me an idea of “where I am” in relationship to where I need to be. My stress was greatly reduced.

Our son would get wired when I was driving him to work because the minutes would click by and we still weren’t there. Even though he knew the clock was fast, he’d stress. Finally one day, the magic number of 5:00 came round when we were literally at a stop light and he could see his store. I pointed out to him that we had more than enough time to get to the store and I LITERALLY saw his face change when he caught on to the concept of where he actually was in relationship to where he needed to be. That stressor has been greatly reduced for him.

This past week, he didn’t sleep well and kept saying, “I think I should just tell them I can’t go to work, I’m too tired.” I encouraged him to tough it out and to his credit, he did. I was prepared for the worst each night when I went to pick him up. Oddly enough, he had a really good week. Each day, he would get in the car and say his shift was either “Okay” or “Fine”. I was in the store a couple of times while he was on the register and saw him interact with customers. He did just fine. Last night, I asked him what he thought had changed regarding his work. He laughed and said, “Well, it might be that I was just too tired to care.” I asked him to think about whether he was making his job harder for himself than it had to be. Hopefully, he’ll think about that. That’s not an excuse for doing shoddy work or sloffing off during work hours, but realizing that sometimes the source of our stress is simply because we ourselves make things so much harder than they have to be.

Everyone does it. My brother was on crutches for a couple of weeks and moved into his downstairs bedroom to be on the same floor as the bathroom. He called me four days later asking if he could borrow a table lamp because he’d gotten up during the night, grabbed the crutches and knocked the bedside lamp off the night stand. When I got over there with another lamp, he looked awful. It turned out that for the last couple of days, he was sleeping with the bedroom overhead light on so he could see where the bathroom was. I suggested leaving the bathroom light on instead and he looked at me like I’d just handed him a million dollars.

I also have some thoughts and observations about the challenges of living independently, but that would this post far too long. I would like to hear your thoughts on what I’ve said already, though.

A lot of the way that autistic people learn to make things harder for ourselves than they need to be is that we are constantly taught that we have to do things in ways that are unnecessarily hard for us. Or are constantly held to standards that have nothing to do with doing a job well.

We can absolutely learn to make things easier on ourselves, but that has nothing to do with learning to be less autistic. I also went through a period of learning to make things less needlessly hard for myself, and it was after I realized that I always made things harder than they needed to be because I’d always been implicitly taught that I had to.

“We don’t want to see them being shuffled from homeless shelter to homeless shelter, we want them to be able to provide for themselves and to be safe and secure. You’ve managed that, but there are scores of others who haven’t been so lucky.”

I realize that this is a fear of many parents (and it’s not an illegitimate fear–homelessness and unemployment are serious problems faced by a disproportionate number of autistic people), but here’s the thing:

These are not the choices.

The choices are not “Be as normal as possible” or “be shuffled from homeless shelter to homeless shelter.” Society has a lot of other choices, and we as individuals have a lot of other choices. Here in the US (in theory, anyway–implementation is patchy so far), disabled people have legal rights to live in our communities with the supports necessary to make that possible. A lot of autistic people, including with very high support needs, HAVE support systems set up that allow them to live on their own terms, in their own homes. If you haven’t seen the film “Loving Lampposts,” there are some great examples in that documentary of what that can look like, even for people with extreme differences and disabilities that can’t be overcome.

A lot of us have work that leverages our true strengths, and good lives that we have control over.

And it’s not simply a matter of some autistic people not being able to manage that–it’s a matter of there being or not being a societal motivation to implement sufficient supports and enforce non-discrimination laws and see autistics as people who have a full set of human and civil rights.

“My job is to equip our son to get through life as successfully as possible and if that requires that he act more “normal” (i.e. hold a job, or whatever) then so be it. It’s about his ability to cope with the world.”

Here’s the other thing:

Precisely the way that a lot of autistic people wind up jobless and homeless…is in attempting to force themselves to look and behave more normally over long periods of time. It’s an overwhelming amount of physical and cognitive effort, it’s hard on your nervous system, it causes burnout and breakdowns, and it leaves you with drastically less energy and bandwidth left over for learning and using real, actual skills.

It’s a trap, it’s not a recipe for building a sustainable life. A lot of the autistic people you see wind up unemployed and homeless…it’s BECAUSE they tried to do this, and in their 40’s or 50’s broke down and couldn’t do it anymore.

It does horrible things to you physically and emotionally. I will probably be recovering from some of them for the rest of my life.

If you want your son getting through life as successfully as possible, equip him to do that as himself, not as, to be blunt, a pretend normal person. It’s not worth it.

I guess our perspectives are markedly different. I see it as life skills and the more experience that anyone has with them, the easier it gets.

At a former job, there were two “interns” who were both on the spectrum. Once we discovered one of them (“A) was barely literate, we worked on those issues, such as giving him a list of items to pick up at the store for our lunches or mailing a package. The defining moment came one day when a package needed to be mailed and I handed it to “M”. “Oh,” he said with dismay, “I don’t know how to do that.” “A” came up and said, “Don’t worry about it, M! I know how to do that, and I’ll teach you!” Off the pair of them went, while my boss and I gave each other high fives.

Last night, my son told me something that a customer had done in the store that was outright disgusting. A couple of months ago, he would have totally freaked out and quite truthfully, I couldn’t have blamed him. However, he said he thought about it and realized that if he said something to the customer, there would be a scene. If he called the manager forward, there would be a scene. Or he could just handle it himself and let it go. He chose the third option. For him, that was a MAJOR leap forward.

Part of my job involves interacting with ADA and human services groups. As a matter of fact, we just had someone who was basically homeless living with us for the past five months. She literally just moved into subsidized housing last week. One thing we noticed right away was that she was very quick to tell us what she couldn’t do — and often wouldn’t even attempt to do other things. (I can’t do the laundry because it’s too heavy to carry. I can’t do jigsaw puzzles because there are too many pieces. I can’t do that because I don’t know how.) The services and the support systems are there, but the need is so great that many people simply don’t receive the support they need. And there is no guarantee that those services will continue indefinitely.

I’m not after squelching individuality, but I do think that people need to be challenged to be the best they can be. It’s exhausting. There are days that I just want to run and hide, too. To me, the issue seems to center around managing stress rather than ability and that seems to cut right across the board of autistic, “normal”, and what have you. Just some thoughts.

I’m all for equipping people with life skills, but that is not what campaigns and therapies that aim to get autistic people to pass as normal–which is what Alex’s post is addressing–is at all.

“Acceptance” doesn’t mean that we don’t ever expect or challenge autistic people to gain in life skills. It means accepting that we will always have to do that as autistic people. No matter how competent, no matter how well-equipped, no matter how skilled we may become, we will always be autistic people. We will always be functioning as autistic people. We will always have different limitations and strengths and weaknesses than non-autistic people. That has to be okay.

It’s not just about pushing ourselves, it’s about the ways in which we push ourselves, and the ways in which we get pushed. There are helpful ways, and there are destructive ways. Helpful ways help us recognize and build on our capabilities, and recognize and get support for our limitations. Destructive ways tell us that we can only be allowed to succeed to the extent that we can pretend not to be autistic, or steamroll our physical and neurological limitations, or function at our best without any accommodation, constantly.

Autism isn’t just inability to do things. Autism isn’t just ignorance and incompetence. Autism is a whole host of core neurological processing differences in things like information prioritization, sensory processing, language, movement, and emotion that affect everything about *how* we learn and how we move in the world. Those differences have to be acceptable. Or else we just don’t actually have a recognized right to exist as autistic people.

Which is the very problem with the belief systems of some of these advocacy groups that Alex’s post is addressing.

Life skills are good. But the efforts involved in being forced to pass as normal take away our capability for them. I don’t know how else to convey this clearly.

Another autistic blogger once wrote “You’re never more disabled than when you’re overcompensating.”

When we’re expending the work of trying to pass as non-autistic, we’re *not* putting that energy into sustainable life skills. We’re hurting ourselves, because our parents are getting told that that’s the only way we can ever succeed.

Auti$m $peaks is especially bad with their brand of autism ‘awareness’. You may remember that video they made some years back, called “I Am Autism”, which compared autism to a tragedy or a more destructive disease like cancer.

Alex!
My son just came downstairs and told me that Blizzard, (a major gaming company) announced that one of their long standing characters is autistic. Sorry, he told me the character’s name, I didn’t write it down, but I should have. He’s ticked because he feels that “autism” is going to be the new “chic trend” like Obsessive Complusive Disorder (OCD) was a couple of years ago and ADHA before it. All of a sudden, every other person was announcing they were OCD just because it was the thing to do. Then when it became too common, it faded away like the dew on the grass.

I’m not too happy about it either because it sounds like they are trying to score off a condition much like the “autism awareness” campaigns you talked about. Unfortunately, I have an appointment in a few minutes so I have to run, but I’d love to hear your thoughts on this.

Reblogged this on the silent wave and commented:
Autism-based “charities” and “support” products, ironically, do *not* actually improve the lives of actually-autistic people, nor do those “charities” and “support” product manufacturers actually care about doing so. Those entities don’t exist for the benefit of people on the Asperger’s/autism spectrum; they exist for a subset of their parents and caregivers, the parents and caregivers who are too lazy or too narrow-minded and personally limited to wrap their heads around the possibility of a valid-but-different way of being. The simple fact is, these entities are detrimental to the lives of people on the spectrum, which is a topic that I’ll be exploring on this blog is the near future. But in preparation for April, which is Autism “Awareness” Month, I’m gearing up for editorials, commentaries, and rebuttals of my own, and I could think of no better way to kick things off with a sneak preview of that than this wonderfully-written post. Cheers to Alex for excellent writing, solid information, and a brave voice! You go, Alex! Good stuff 🙂

So April is Autism Awareness month, is it? That might explain why I just read an article saying that next month, Sesame Street will be introducing a new puppet character named “Julia” who just happens to be…..wait for it…..may I have a drum roll, please…..autistic. The character apparently made an earlier appearance and is now going to be a more regular member of the cast.

The website “The Hill” made the following statement in their article…”Sesame Street worked with Autism organizations including Autism Self Advocacy and Autism Speaks to best personify the traits of a child with autism, according to “60 Minutes.” Julia’s character aims to combat stigmas associated with autism spectrum disorder, as diagnoses of autism have grown.”

I get the feeling that this is more of a marketing ploy rather than a strategic move to help autistic people.

As you say, the character of Julia was created with input from ASAN (among others) and I think she has a lot of potential to be a positive example. When kids see the other puppets interacting with Julia it will help normalise autism, let them see autistic kids as kids rather than a diagnosis. I also think autistic kids need to see more characters in the media who they can identify with, who are like them. That goes for a lot of disabilities too.